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Prolia dangers for those with autoimmune disease
The impact of Prolia has horribly worsened my precarious autoimmune conditions. So much so that Amgen legal dept contacted me within weeks of my injection.
In the fine print of clinical info for physicians, after all other adverse reactions are listed, Amgen states that Prolia can cause immunogenicity.
My reaction started within seconds of the injection. It affected my brain immediately. Subsequently a wave of encephalitis flares hit. This has been topped by flares of all AI conditions & has been relentless.
Now my jaw & teeth are involved. I have new skeletal pain.
In desperation I called Amgen immediately for antidotes like dialysis. There isn’t anything that can be done.
Literature states that severe AI flares can start immediately or months later. It’s also stated these flares might continue after the initial dose wears off.
Of all the Rx I’ve been administered to treat serious rare & “mainstream” autoimmune diseases, Prolia is what’s taking me down now, after my ongoing push to get through since 2011.
I don’t know what the future holds but the present has no offerings for medical stability.
As always, pharmaceutical companies can afford damages or even losses of patients then move on without looking back.
I’ve reported to FDA. I don’t understand how a potent drug with so many open ends & no solutions would be allowed on the market. This is the egregious process of the drug industry.
I get that Prolia has helped people. But it’s still unknown how long term use will impact these patients.
And my final question is why an immune suppressing, immune modulating drug would be given to a healthy person? As one who needs immune suppression to reach stability (sometimes), I know the fallout all too well. It can open up a whole new can of worms.
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Ugh! I feel for you & don’t blame you for stopping. Any hope for the swallow-reflux to clear?
I wish I never relented my decision to take an osteoporosis drug. I’ve only had 1 injection. First & last.
I then read about all the lawsuits… insanity! Hard to believe a drug designed to help bones has hurt so many in totally unrelated ways. Criminal.
Take care. I hope the other issue resolves!
I have an immunodeficiency (not autoimmune) like the Boy in the Bubble but not as bad. I do infusions of other people's IgG blood plasma to get their antibodies to fight viruses and bacteria. I am an 83 year old female and still manage to walk 2 miles a day and live in a house with 15 inside stairs. I was diagnosed with osteoporosis in my fifties however my endocrinologist from UCSF that specializes in osteoporosis wouldn't put me on any of the specialized drugs because my immune deficient body may not be able to handle it. I did know a woman that took Fosamax one of the older drugs and lost one side of her jaw. But I will say that both my daughters have osteoporosis and both have been on versions of the newer drugs without problems. But their immune systems are normal.
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2 ReactionsHi! I have CVID - immune deficiency of IgG and IgM which are treated with IVIG. Sounds like we have the same (or similar) issues.
It’s wonderful you’re exercising! I think exercise is the best bone strengthening “Rx” there is.
I’m unable to exercise & developed Steroid-induced osteoporosis. However, once I finished tapering off steroids, my bones reverted to a healthier condition.
But drs felt I should receive treatment which always made me nervous.
Now I’m paying the price.
I’m so glad you have great doctors overseeing your health! It’s not easy to find good doctors these days.
I hope your well being continues for a long time to come.
OMG I have CVID also, but I am always afraid if I write it like that I have to do the dog and pony show. When were you diagnosed?
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1 ReactionI understand! I have 2 rare diseases (CVID🦓 & Autoimmune Encephalitis🦓🦓) plus a cluster of other autoimmune too.
You’re not alone! !
I was diagnosed with by an immunologist at Loma Linda a few years back.
Rheumatologists had findings of it as far back as 2014 but they aren’t well-versed in it. Actually, quite clueless.
I was on IVIG for autoimmune diseases first. But later for IVIG only. It was a game changer with regard to stopping infections!
Now you know someone you don’t have to dog & pony for😊
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1 ReactionNot only that but it looks like we both live in California. Going to meet a new pcp in two weeks and will have to do the show for him
Yes, I’m in So Cal 🙂
Good luck on your search! A strong PCP can be a great medical advocate. But medical is so hard these days.
I’m also looking for a new PCP.